With no hope for recovery, death is the only way out

Ann Curry, on Dateline NBC, takes a film crew into Serbian institutions that look much the way institutions did in the U.S. a generation ago.

People with intellectual disabilities are shunned and warehoused, imprisoned without supervision under filthy conditions behind crumbling walls and rusted bars. They are given no treatment and meager care that may include being drugged or tied up day after day to control the anxiety and aggression that comes of being locked away. One man has been imprisoned in a crib for all of his 21 years. Among those shown are people with cerebral palsy, Down syndrome and other conditions.

Disability is a source of deep shame in Serbia, and parents are urged to put children with intellectual disabilities away in remote government institutions or risk financial ruin. Some surrender their children without ever glimpsing their faces.

Rasim Ljajic, a government official in charge of the institutions, acknowledged that the conditions are inhumane, but said the government does not have resources to fix the situation.

Said Laurie Ahern, associate director of Mental Disability Rights International:

The idea of being locked away and the idea that somehow these people, that their lives aren’t valuable, that they are less than human, because they were born with a disability. It’s horrendous.  And it’s awful. And it shouldn’t happen.

The video is here.

See earlier post here.

See also:

Reporter’s notebook, by Tim Sandler, NBC News producer

Shunned: Photos from inside Serbia’s mental institutions

About two-thirds of pediatric cancer survivors experience at least one late health effect of treatment, and for more than one-quarter of survivors it is severe or life-threatening.

From the Los Angeles Times, an extended feature about young adults who have survived childhood cancer only to find that their health is now threatened by the very treatments that once saved their lives

Cancer therapies injure, starve or kill healthy cells along with malignant ones, and as a consequence, survivors have a heightened risk of health problems, including early heart attacks, second cancers, stunted growth and infertility.

… The developing brain — and psyche — can be affected as well. Radiation to the brain can result in a drop of 20 or more IQ points, causing learning disabilities for some. And while some cured youngsters enter adulthood feeling a renewed sense of purpose, others must deal with lingering bitterness and trauma from their treatment, which can emerge as depression or anxiety when they become adults.

… Only recently is the medical community understanding the importance of lifelong health monitoring to help them avoid, or detect early, the host of medical risks that could lie in their path.

Related links:

• Programs for childhood cancer survivors
• Survivors tell of their experiences with childhood cancer

Welcome to Max’s world, Bipolar disorder is a mystery and a subject of medical debate. But for the Blakes, it’s just reality.

In a Newsweek cover story, Mary Carmichael tells the story of the estimated 800,000 American children with bipolar disorder through the eyes of 10-year-old Max Blake and his family. Max was diagnosed at the age of two and first tried to kill himself at seven. He has been on 38 different psychoactive drugs, all with serious side effects. His parents worry about that, but to some degree have made their peace with medication.

It is an elusive disease that no parent fully understands, that some doctors do not believe exists in children, that almost everyone stigmatizes. But this is also a love story. Good things happen. A couple sticks together, a child tries to do better, teachers and doctors and friends help out. Max Blake and his parents may not have much in common with other families. They are a family nonetheless.

… The disease is hard to pin down. The bipolar brain is miswired, but no one knows why it develops that way. There are many drugs, but it’s unclear how they work. Often, they don’t work at all, and they may interfere with normal brain growth. There are no studies on their long-term effects in children. Yet untreated bipolar disorder can be disastrous; 10 percent of sufferers commit suicide. Parents must choose between two wrenching options: treat their children and risk a bad outcome, or don’t treat and risk a worse one. No matter what they do, they are in for uncertainty and pain.

Advice for parents of children with bipolar disorder.

Heart Association calls for child cardiac testing

From the Wall Street Journal, Philadelphia Inquirer and elsewhere:

Millions of children taking drugs for attention deficit hyperactivity disorder should be checked for heart problems, the American Heart Association said yesterday, a recommendation that also might identify more youngsters with cardiac disorders.

Ritalin, Adderall, Concerta, and other stimulants commonly prescribed to treat ADHD can increase blood pressure and heart rate. While not a problem for the vast majority of patients, they can lead to life-threatening conditions and even sudden cardiac death in those with heart conditions.

… The advice marks the first time a medical-guidelines body in the U.S. has urged wide use of an electrocardiogram, which charts electrical activity in the heart, to screen a presumed healthy population for abnormalities.

But there is debate among experts about the value of using the test to screen such a large pool of patients to detect a rare condition. The hope is that such a test — in combination with a comprehensive checkup — will help to avoid the rare cases of sudden cardiac arrest that have been linked to the widely used medicines.

Fifty years after the drug was launched in Britain, survivors are still fighting for compensation from its German makers

An extended feature in the [London] Sunday Times about the drug that caused deformities among thousands of children whose mothers took it while pregnant.

The survivors are approaching 50th birthdays that many thought they would never see. Yet it is still difficult to predict when — or if — they will be adequately compensated for their “man-made” condition. They are seeking payments from Grünenthal, the German company that produced the drug and sold it around the world.

“This is bigger than 9/11 [in terms of the numbers affected], but it’s not sexy because we weren’t all killed or maimed on the same day,” said Gary Skyner, who was born with a short left arm and no thumbs. “And now we’re older and uglier, people don’t want to know.”

PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science — or just a MySpace for the afflicted?

Writing in the New York Times Magazine, Thomas Goetz describes what happens when patients band together on the Internet to share their most intimate medical information, from symptoms to drugs and dosages.

… PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases. They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications.

… Of course, turning patients’ experiences into usable data raises a host of questions for medicine. When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope — and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?

From the BBC:

The human rights of people with learning disabilities are frequently breached, according to a report from the British Parliament.

The Joint Committee on Human Rights says vulnerable adults are particularly likely to be abused and neglected. The report highlights cases where people in care homes or hospitals were inappropriately restrained with straps or sedated with drugs.

The committee was shocked that even in cases of horrific abuse, staff did not know they were doing wrong.

Improvements are being made, the report says, but a culture based on outdated negative stereotypes needs changing.

“The evidence has shown us that the consequences of a lack of awareness of people’s rights can be devastating,” said Andrew Dismore, chairman of the committee.